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Saturday, July 30, 2016

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Respond to surveys, share your research ideas, advocate for government research progress and funding, learn about clinical trials, and more.

Researchers are committed to finding solutions for everyone affected by MS — the very people who hold the key to the answers. Without participants in research studies, MS research would come to a standstill.

People with MS, and sometimes family members, can help advance MS research by:

arranging for brain or spinal cord donation to a tissue bank; this type of donation is incredibly valuable and truly appreciated by all who are involved in moving toward a world free of MS. Blood samples also can be donated for use in MS research studies.

Participate in a Clinical Trial

Clinical trials help to determine if treatments and other interventions are safe and effective. Studies enrolling diverse populations are monitored to ensure that the rights and safety of all participants are protected. Without the participation of people with MS, it would be impossible to develop new and better solutions.

Participate in Genetic Studies

Donate to Tissue Banks

MS tissue banks are laboratories or medical centers which store biological samples from people with MS, often from people who do not have MS, and from family members. Samples commonly include blood, and sometimes umbilical cord blood. Postmortem brain, spinal cord and other specimens from people who had MS are frozen or otherwise preserved.

Next, during a Phase 2 clinical trial testing the efficacy of a common antihistamine, clemastine fumarate, to treat optic nerve damage in people with multiple sclerosis, the drug was able to slightly reverse damage to their visual system.

People with MS and their families may feel that there is a lack of education and information from their healthcare providers about the possible consequences of the disease. This can make it difficult to plan for the future and possibly induce stress due to uncertainty.

The research team, led by Laura Dennison of the Academic Unit of Psychology, University of Southampton in England, wanted to collect information on how healthcare providers communicate with their MS patients about the disease prognosis. The scientists asked 15 people with MS to fill out in-depth interviews, then used a technique called thematic analysis to examine the content of the interviews.

A total of six themes recurred during the interviews, including: unsatisfactory communication with healthcare providers, issues of uncertainty associated with MS-disease outcomes, and problems with accepting that uncertainty. Many patients felt confused about their future and wanted to stay focused on the present. Several of the participants reported that healthcare providers discussed their MS prognosis only minimally.

Overall, the researchers concluded that “[Healthcare providers] must carefully consider whether, when, and how to share prognosis information with patients; specific training may be beneficial. Future research should confirm findings about limited [Healthcare providers]-patient communication, distinguish predictors of patients’ attitudes towards prognostication, and identify circumstances under which prognostic forecasting benefits patients.”

The study indicated that communication about MS prognosis is an area that deserves further study. However, the study analysis was highly qualitative and only included a small number of participants. Additional work on the topic of healthcare provider communication about MS disease outcomes would be beneficial for further informing clinicians about optimal MS treatment.

Multiple sclerosis (MS) patients in the U.S. with higher disability scores also have higher rates of health resource utilization, higher healthcare costs, and lower work productivity and health-related quality of live, according a study by researchers at Adelphi Real Worldand Abbvie.

During the course of their disease, the majority of MS patients eventually experience some degree of functional impairment, which can affect not only their ability to live independently, but also their ability to work. Such impairments severely effect a patient’s psychosocial health and financial well-being, with dramatic changes in health-related quality of live.

Several studies have reported that increased disability in MS is associated with increased costs due to missed work days or unemployment on the one hand, and to growing needs for home modifications and mobility aids on the other, or a skilled nursing facility when disability becomes quite severe. However, most of these studies involved pre-2010 data, and new ones are required to address the current financial burden of MS.

The researchers conducted a real-world survey to explore the burden associated with MS disability in the U.S. In particular, they aimed to quantify the relationship between increased disability and healthcare resource utilization, healthcare costs, quality of life, ability to work, and productivity at work.

They included 715 patients (with a mean age of 42.1 and mean time since diagnosis of 6.9 years) whose neurologists completed a detailed patient report form. Among the patients, 355 completed a questionnaire reporting their perceptions of their diagnosis and quality of life.

Results revealed that patients with higher disability scores — higher than 3 as measured by the Expanded Disability Status Score (EDSS) — and current relapse had significantly higher utilization of health resources, including physician visits and hospitalizations in the 12 months that preceded the questionnaires, than those with EDSS lower than 3 and no current relapses.

In addition, patients with higher disability were significantly more likely to be unemployed, to have had to stop working, and exhibited poorer health-related quality of life.

Multiple sclerosis (MS) patients may improve cognition with regular walking, cycling, and yoga, according to research. The study found that increasing exercise and physical activity can help multiple sclerosis patients improve cognition. Cognitive problems are common among multiple sclerosis patients as the report explained, “Cognitive dysfunction in MS is associated with negative health consequences, including depression, reductions in quality of life, and loss of independence, as well as the loss of driving ability.”

Exercise is known to improve brain function and may help increase protection of the central nervous system cells. To date, there have only been three studies that looked at the beneficial effects of exercise on cognitive function in multiple sclerosis.

For the study, researchers looked at three different kinds of exercise and physical activity in people with relapsing-remitting multiple sclerosis who did not have identified problems with mental processing speed. The exercises consisted of 20 minutes of moderate intensity treadmill walking, moderate intensity cycling, and guided yoga.

Results in the exercising groups were compared to results in the quiet rest group with no exercise.

All three exercises were shown to have positive effects on cognitive function with treadmill walking showing the greatest benefits.

The researchers concluded, “The present results support treadmill walking as the modality of exercise that might exert the largest beneficial effects on executive control in persons with relapsing-remitting MS without impaired cognitive processing speed. This represents an exciting starting point for delineating the appropriate exercise stimulus (i.e., modality and intensity) for inclusion in a subsequent longitudinal exercise training intervention for improving cognitive performance in this population.”

According to the Mayo Clinic, there are a few tips available to help you self-manage your multiple sclerosis. Here are some lifestyle, home remedies, coping and support tips so you can feel better in your daily life.

1. Get plenty of good rest

Everybody functions better after a good night sleep. Getting some good rest is even more important to someone who suffers from multiple sclerosis. So to improve your lifestyle, try sleeping at least 8 hours a night.

Among other things, they studied how this information could be used to benefit those with chronic illnesses.

As part of the digestive system the human gut flora contains more bacteria than any other part of the body. Thegut flora (gut microbiota, or gastrointestinal microbiota) is the complex community of microorganisms that live in the digestive tracts of humans, other animals, and even insects.

SYMPTOMS of MS

In multiple sclerosis , damage to the myelin in the central nervous system (CNS), and to the nerve fibers themselves, interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body. This disruption of nerve signals produces the primary symptoms of MS, which vary depending on where the damage has occurred.

Over the course of the disease, some symptoms will come and go, while others may be more lasting.

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